Pack your things – you’re going home! I had always envisioned these words being said but, to actually hear them scared me to death. After all of the ups and downs, the medications, the late night bed changes, the uncontrolable vomiting, the tossing and turning, the worrying and the praying, we are, at last, going home. While I would be happy to have my family under 1 roof, I somehow found comfort in knowing that the nurses were just a button push away. Try as I might, to convince the nurses and Dr.’s that we really should stay a little longer, it had come time for Jaylon to go home. The medical staff had done everything to prepare us for this day and now it is all up to Jaylon and RJ’s donated cells. The house had been cleaned from top to bottom. Plants put into adoptive care with family and friends – Vents cleaned, dusted and sanitized – Carpets shampooed – And my dust bunnies, whom had lived with me for years – put out. A huge thank you to our social worker, Faye Bullio, who came and gave the thumbs up for Jaylon to come home. Thanks Mrs. Bullio for your suggestions and guidance.
The 1st thing that we had to do was to go to the nurse educator to learn how to care for Jaylon’s central line in his chest. Not too bad, would I remember how to do this at home? Next, review Jaylon’s medications. Morning meds – afternoon meds – evening meds. Bath’s ? No more wiping Jaylon of with the cleansing cloths. He could now sit in a shallow tub of water and take a bath. Don’t forget to cover the central line so that it doesn’t get wet. Meet with dietary. No raw or uncooked vegetables (Jaylon loves and lived on salads and strawberries), no shellfish, no eating out. Meals must be eaten with 30 minutes of preparation. Anything not eaten must be discarded. Linens changed(everything – blankets, comforters, sheets) and rooms cleaned on a more rigirous schedule than I was accustomed to. Are they sending someone home with me to remind me and help me?
Just as I had felt when we started this process, there were more papers to sign. Keep up with the medications- doses and times, be certain to contact hospital with any changes in habits, skin discolorations, problems eating or sleeping, return on Monday @ 8am for clinic. We gathered all of ou belongings that we had accumulated during our stay, put Jaylon’s mask on, I went to disinfect the car again before Jaylon got in and Rick and Jaylon said good-bye to the nurses and families that had become our family during our stay. In HIs infinite wisdom, God had arranged for me to have an elevator all to myself and I cried the whole 4 floors down and out to the garage. A new day was dawning for Jaylon and for me. I was filled with thankfulness for how God had kept us & been with us every step of the way, I was nervous about going home & being able to do everything that was required of me and I was elated for Jaylon; A life free of Sickle Cell – Life anew. Even though Jaylon will be free of Sickle Cell, the work doesn’t stop there. I am determined to bring about more awareness of Sickle Cell Disease and how it affects our children. Not just my children, but our children. My life has forever been touched and changed by Sickle Cell Disease.
